News about Long Covid including its relationship to ME/CFS 2020 to 2021

Yes Michael, it could also be that patients are just making it all up or that mysterious illness-without-disease of yours.

 

Occams razor - which is more likely;

That one person with a vested interest is lying about symptoms existing or that millions of unconnected people are.

 

I've noticed that American doctors on twitter are intrigued by ME when it's brought to their attention. Nothing from Canadian doctors when it's mentioned though- silence. I didn't it post it here, but there was a rural Canadian doctor who sarcastically (hard to tell) said she wanted 'proof' that these aren't psychosomatic disorders. A string of doctors agreed with her. Ugh.

 

Isn't Toronto a centre of excellence for such thinking. They even held a conference there.

 

WLRN: Long Haul Journeys With COVID-19: South Florida Research Hopes To Track Lingering Symptoms

Dr. Nancy Klimas is the director of the Institute for Neuro-Immune Medicine at Nova Southeastern University, in Davie. She's also a research director at the Miami VA.

Now, Klimas is studying the people who end up with almost textbook Chronic Fatigue Syndrome after COVID-19.

"I feel like my whole career to date was to get me ready to be able to help with this post-COVID crisis," she said.

Klimas said people with Chronic Fatigue Syndrome do usually get it after a virus.

"It's a neuro inflammatory condition of brain inflammation condition that follows a mysterious viral infection. So here comes COVID," she said. "You couldn't overlap them more tightly in terms of presentation. They have the racing heart fluctuations and blood pressure, all the inflammatory symptoms, all the same things are going on in these 'longhaulers,' including this profound fatigue."

NSU was awarded a $4 million dollar grant from the U.S. Centers for Disease Control and Prevention, for Dr. Klimas to study these longhaulers, or people who have symptoms for a long time after COVID-19. She'll work with the Florida Department of Health in Broward County.

...

Dr. Klimas said if you are recovering from COVID-19 there are things you can do at home to feel better:

"You have to listen, stop, go slow, eat as healthy as you can. Rest restoratively. Get enough sleep and then come back very slowly, and I think that you'll find that, if you don't do that, you could push yourself into a long term chronic illness," she said. "Getting these rehab doctors to listen to that 'go-slow' advice is one of my missions right now."

 

Apologies if this has been shared before, but as it talks about among other Niacin, which has been discussed on the forum, I thought it might be of interest.
The treatments that are talked about in the video as possible approaches for Long Covid are Niacin, Selenium, Zinc, Quercetin, Vitamin C and Vitamin D along with low histamine diet, antihistamines and prescription meds.

https://www.youtube.com/watch?v=9-3V3h0ncIA

 

...millions of unconnected people who have nothing to gain, but everything to lose.

Never mind. Poor dear's only trying to aggravate people because he knows he's history. Discredited history, at that.

 

Oof this is not encouraging. The first 6 months or so have been completely wasted and the following 6 appear to be on the same path. At least a whole year thoroughly wasted.

I do love that they mention having no experience with this but do note that they, in fact, do have experience with it, with ME and the example of Ebola they used. It's that medicine did nothing to solve this. They have experience, at neglecting it. At least own what you did, dammit!

 

Normal things: a "leading researcher" is completely puzzled by the basic facts of his "specialty" when he sees them. Seriously Sharpe has never heard about most of those symptoms, doesn't even know most of them are common to ME. He is completely oblivious to almost every basic fact of the topic he self-proclaims to be an expert in.

And he proudly displays his ignorance. Pride and ignorance. Hubris.

 

The Atlantic - Where Year Two of the Pandemic Will Take Us by Ed Yong

Once neglected, long-haulers have forced the world to recognize their existence. In May, many scientists I spoke with had never heard of the phenomenon; this month, the National Institutes of Health held a two-day conference to discuss it. “I don’t think we can ever be forgotten,” Chimére Smith, a middle-school teacher in Baltimore, told me. “The health-care industry can never again say they don’t know what a long-hauler is.” But “nothing is happening fast enough to help the first wave of us,” Davis told me. Some long-haulers have been diagnosed with chronic illnesses such as myalgic encephalomyelitis and dysautonomia but few specialists study or understand these conditions. Those who do will soon be overwhelmed by a tsunami of new patients. “There’s already such a shortage of doctors who know about long-haulers and can do anything to treat them,” Davis said. “I can’t imagine what will happen with hundreds of thousands more people going down this route.”

https://twitter.com/user/status/1343912632349302784


https://twitter.com/user/status/1343912636153524224


https://twitter.com/user/status/1343912639819370498


https://twitter.com/user/status/1343912643367731203

 

This is the standard medical establishment reaction to illnesses where understanding of pathophysiology is really poor, like with ME. They just don’t know what to do so they throw the kitchen sink (or hot potato?) at it. It will fail patients because the illness is very disabling and there are currently no proven effective treatments. Most patients need immediate and real answers to mitigate the catastrophe to their job, career, family, livelihood.

Evidence continues to roll in, just like many of us predicted, that long COVID very likely is ME/CFS in a majority of patients that are still sick. So past is prologue and teams of doctors won’t truly help other than give them the false feeling that they are getting help while the catastrophe to their personal lives isn’t mitigated.

We want ME/CFS to be better understood, is it fundamentally an immune system disorder? Or neurological disorder? And we want to go to the specialist in those disorders who is properly trained. I’m really bothered by the term “complex” or “multi-system” diseases, it just means we don’t know jack.

 

It has gotten some replies
https://twitter.com/user/status/1343988791384535041

Within a few months of the start of the pandemic, research funding into long Covid was made available, guidance on treating it has been issued already, and 40 clinics for it are to be set up in England alone. By contrast, for decades ME/CFS sufferers were ignored, dismissed as hysterical, and generally failed by large sections of the medical community and the NHS. Even now that the illness has been officially recognised, medical and social care support for sufferers varies from inadequate to non-existent, and there is scarcely any public research funding.

ETA: The quote I've added is from a professor Christopher Norton. The name doesn't ring any bells..

 

Thank you @NelliePledge

 

Unfortunately, there is still plenty of possibility of being neglected, the door to shove it all out as mass hysteria is wide open and reinforcements are on their way to man the pumps. There was a pretty big high for a while, people rushing to figure out the basics who seem to have fallen out of love entirely upon finding it clearly looks too much like "those patients". The sugar rush has died down already, the shiny new thing turns out to have been an old, difficult and complex problem that nobody wants to deal with. Or at least the bigger part of it, in sheer number and DALY anyway. If only DALY actually counted for something.

This was a political issue for decades and it still is. The LC community has pinned their hopes for months that medicine would do its thing, hence most of the displeasure at us pointing out how difficult that would be without a massive change in culture and basically the biggest, most painful mea culpa in history.

Everything is still on the table but this will be a huge political fight, at least as big as AIDS. It will be pushed back so much harder than long haulers expect. Even entirely within the realm of medical institutions it's 99% a political fight, so much baggage to carry, more baggage than a freaking airport terminal. People bet their career on this, institutions like the NHS bet billions on the belief that there will never, EVER, be a medical explanation for it because it simply isn't.

This isn't about what can be done, it's not a strict matter of economics. It's a question of what people are willing to do, more about who gets what and how much than what is best. That's politics. Some people get nothing so that a few can have it all. This is the change that needs to happen and it's a massive one.

 

We've all seen repeated promises of nutrient cocktails like this many times before. It's all hype and confirmation bias.

 

The Problem of ‘Long Haul’ COVID

https://www.scientificamerican.com/article/the-problem-of-long-haul-covid/

I have no idea what this "final diagnosis box for chronic fatigue" could even possibly mean. And I have no idea what kind of importance these physicians think "reassurances" carry. Not knowing is bad. Both ways.

Have been known, yes. Also has been very harshly silenced and buried.

I think it's safe to say, to the point of being non-controversial, that were it not for social media and the Internet being in such widespread use, that medicine would have completely missed on all of this. It would been fought and buried from the onset, shushed and stamped down with force. Nothing at all would have happened, even at this scale. It would have been too easy to confidently claim it all as yet another evidence that mass hysteria is real and serious.

Anyone disagree to this? Even just a little? Even after more than 6 months there is nothing but dysfunction and barely an inkling of anyone anywhere learning things they didn't already know a year ago. My estimation of the medical profession is frankly going down further than I thought possible, and I already thought it had bottomed out.

It's like the profession is custom-built to fail at this. It excels at most things under its remit but this kind of problem? Absolute dumpster fire, the kind that does not exist in any other profession. And I don't blame the people themselves, it's the system that is broken beyond any hope of repair, it must be rebuilt from the ground up.

 

ITV News: 'I want my life back': The desperation of 'long Covid' sufferers out of work since March